Who Am I Now? Finding a New Path with Auto-Immune Disease

Since being diagnosed with an auto-immune disease called Polymyalgia Rheumatica, or PMR, I have had to give up almost everything I love to do in life. In this post I talk about my severely limited activity level, learning to accept my condition, and finding solutions that will help me keep doing photography.

I am awake. My first thought: “Don’t move!”

As long as I stay perfectly still, the day has potential. Maybe I will get up and be warm, sit outside and enjoy the morning with my coffee, go for a walk, and create art. But as soon as I move, that dream might pop like a balloon overfilled with too much hope. Hope is not something I am good at, so I don’t move, and I try to enjoy this moment of uncertainty.

Half an hour goes by. I start thinking about coffee.

I turn my head. Nothing. I take a deep breath and prepare. As I roll on to my side, I wince as both of my shoulders are squeezed by invisible hands. I imagine the hands have long finger nails that pierce into my skin and right through my bones until they crumble. Deep breath.

I try to push the blankets away, but my arm barely moves an inch. I use my feet to kick them off. I roll out of bed and immediately reach for the dresser for balance. I will not be able to put on a sweater today, so I wrap myself in a blanket and head to the kitchen.

This is just one of the many ways my daily routine has changed in the past few months. Not that I was ever a “jump out of bed and greet the new day with enthusiasm” type of person. But this is only the beginning.

Since being diagnosed with an auto-immune disease, I have had to accept many losses.

It’s called Polymyalgia Rheumatica – otherwise known as PMR. It’s a form of rheumatism that causes joint pain in the shoulders, neck and hips, crushing fatigue, fever, and a sick feeling similar to that of the flu. It is not a life threatening disease, but it is a debilitating life-altering disease.

But feeling sick and tolerating pain are one thing. Having to give up everything I love to do in life is quite another.

I can no longer carry my camera gear. I can only hold my smallest camera for about 10 minutes. I am not strong enough to handle the boat. I cannot go for hikes. International travel is out of the question.

Who am I now?

I have discovered through this process how much of my identity is tied up in the things I love to do. I am a photographer. I am a boater. When I can no longer do those things, who am I? Who have I become? I am a sick person. I am weak and feeble. I am worthless. I am a burden for those who love me. Already. At 51.

If there is one good thing to come of all this, perhaps it is the realization that I am none of those things. I am not the things I like to do. I am not the business I run. I am not my failing body. Those are just things that are part of my external world. I am still the same person inside.

My biggest challenge right now is to accept what is happening. People always say you have to fight it. You have to fight for survival. But when you fight you are angry, you create a tension in your body that is not conducive to healing, you are resisting the world and what happens in it.

This thing is happening, I cannot control it, and it doesn’t care how I feel about it.

Part of acceptance is to stop trying to figure out why. Why me? What did I do to cause this? Am I eating the wrong thing? Did I get bit by a strange bug while travelling? Is it the sunscreen? The fact is that no one knows what causes auto-immune diseases. And if the experts don’t know, I am probably not going to figure it out either. It just is.

The silver lining with this particular disease is that it will eventually go into remission. Most people have it for about 6 years. Some lucky folks only have it for 2, others have it for 10.

I have spent a lot of time grieving over what I have lost. But now I am trying to move on and find the good thing. I have lost so much that there is a large opening for something new to announce its arrival. Some new door must open. Some new path must reveal itself. It must, right?

I think I have made a little headway in discovering my new path. With a giant tripod and gimbal head, which Ray sets up for me, I have been able to continue photographing wildlife without having to deal with the weight of the gear. I’ve been playing with time lapse photography, which requires a great deal of patience. But if there’s ever a time to sit on a location for hours, this is it. I’ve been delving into digital art, which I have really come to love, so much so that now I am making my own textures and photoshop brushes to use in my art.

And when I cannot do any of those things, and find myself limited to books and videos, I decided to become a lay-wildlife biologist! Every week I pick a new animal and learn everything I can about it through books and video.

I don’t feel like I have found my path yet, but I continue in the hopes that whatever new thing reveals itself, it will be worth the price of admission.

In the meantime, I know how lucky I am. Whenever I wonder if it will all be okay I ask myself “am I okay RIGHT NOW?”. Yes, I am okay. I am here in the RV in a beautiful location. I am with the man I love. I am free. I have nature to enjoy. Right at this moment I am okay.

I wish I could say this was my answer every day. But I have to admit on many days I am not okay. But I am trying. And making art, on the days when I can, is helping me through it.

This is one of my digital art pieces. I’m thinking of calling it “The New Normal”. My subconscious was at work because it wasn’t until it was complete that I realized it is almost a self portrait. The old me and the new me. We look virtually identical on the outside.

Thank you for sharing so honestly. I’ll be rooting for you as you work with these challenges. I would be interested in future posts about the struggle and the ways forward that you find. Love and peace, Darrell

Wow! I’m really sorry to hear that you have PMR. It sounds like a nasty disease. Because it is temporary (alebit 2 to 10 years), there is hope down the road.

Will you be able to come South this winter?

I’m glad you can continue working on your digital art as I enjoy it a lot. If you need help with anything that I could do remotely, please let me know. As photographers, we need to help and support each other in times of need.

Anne, So sorry to hear of this huge challenge you must endure. Sending support and prayers for relief and remission. I have always admired your ability to innovate and regroup. I pray those abilities will serve you well until you regain your health.
Kathy

Hi Anne – The good news is, clearly, that your mind remains sharp, bright and thoughtful. Keep thinking, keep doing – so you can discover what you can do with your new normal!
Hang in there,
Andy Black
Manchester, NH

Hi Anne. I am sorry to hear your news and saddened to hear how PMR is affecting you. I have been a Doctor in the UK for nearly 40 years and treating a patient with PMR is one of the most satisfying things I have experienced. Unfortunately the only treatment which works is steroids which need to be taken daily and monitored for at least 18 months with tapering dosages based on blood tests. The benefit from steroids is almost immediate and I have had patients show complete remission within 48 hours. The downside is the side effects of long term steroid use and this is why you need careful and regular monitoring. i hope you have seen a good physician and taken advice on this. Sometimes in life you have to weigh up the quality of life against the side effects. Waiting 6 years for remission seem very unusual when this condition can be treated relatively easily. I hope you can get treatment soon and resume your life ASAP.
Best wishes

Hi Colin, Yes, I have been on steroids for 10 months and while I did see an immediate improvement, about 70%, the remaining symptoms are significant and I’m still on a very high dosage. Before the steroids, I could not function at all. Current research says that the average time to remission, when a patient may stop taking steroids, is 6 years. So waiting the 6 years is WITH steroids. Without them, there is a risk of the disease progressing to its worse form, GCA, which can cause a person to suddenly go blind. So I would definitely take the horrible side effects of steroids vs the possibility of losing my sight. Thank you for your comments, I appreciate your insight from a doctor’s perspective.

I took prednisone for about 3 years for PMR. I also have fibromyalgia, osteoarthritis (I’ve had 2 joint replacements) and Grave’s disease (autoimmune hyperthyroidism). I hope I don’t have to go through PMR again, I understand it could come back. Yours sounds worse than it was for me, mine was all upper body, mostly neck area. Pain is everyday life for me, it has been for almost 40 years. I keep saying that I will not let it take me down. Some days are rough, others are good. I have to keep moving, that’s the most important thing. Exercise is important for today and my future, I push myself to do whatever I can. Walking in nature is healing. Photography can be healing too. I’ve mad it to 70 years old and I’m still going. I hope you feel better very soon.

WOW! Just….WOW! We “know” you from The Love Your RV channel. We had noticed the absence of some of your usual summer activities and knew something unfortunate was afoot.

I read your post aloud to my husband and oh my goodness, you have a real gift with words. We don’t know you personally and yet reading your words brought me to tears. The raw honesty, the willingness to share your pain – I cannot find the words to tell you how powerful your writing is.

Thank you for your openness and the gift of your art, in whatever forms it takes.

Anne,
I was diagnosed with PR in spring of 2004. It hit literally overnight and was totally debilitating. The diagnosis took over a month, partly due to my “young” age of 54. PR usually affects women over 65. Usually being the important word here.

I was off the steroids and on my way to complete remission by the end of 2007. A little over 3 years. I know even that seems like forever right now (I’m sorry ), but with the correct meds, you can get thru this and NOT give up your life’s passions.

This Dr in the UK is totally correct. The diagnosis is difficult and the initial pain is crushing – but the correct dose of steroids, along with judicial pain management , WILL give you substantial relief and allow you to go about your life with way less pain.
The chronic fatigue will remain challenging, I admit. The weight gain from the steroids is unavoidable.

But I think you need to remember, every day, that the “average” of six years is just that – an average. 50% of PR sufferers are UNDER that average – some of them recovering in less than a year. Keep your chin up and fight for whatever dosage of medications it takes to maintain your way of life.

Yes, the steroids will have long-term effects, but they are manageable. You’ll want, for example, to proactively monitor and actively work to maintain and build calcium levels back up. I ended up with osteoporosis (15 years later) from the nearly 3 years of 25 mg of prednisone I had to take to stay on my feet during my PR years.

You’ll get thru this and come out the far side JUST FINE. 15 years post-PR, at age 69, I am a dog sports trainer and competitor, a solo RV traveler, a writer and a fiber artist – all the things I thought I’d have to give up. DON’T GIVE UP. (((Hugs)))

Deb – It’s reading about women like you that made me realize that even with my autoimmune problems, I’m still able to RV with my husband. We decided to stay a month at each campground. That way we have a chance to see things we want to see even if I’m having a bad week. We don’t hurry through anywhere and I can stay on the couch when I’m having a bad day.
Autoimmune diseases are tough. It’s a lot of testing, usually more than one doctor to get to the root of all of the issues and being willing to change doctors when you run into one that doesn’t listen to you.
Anne – thanks for sharing your story. Keep your head up because, like I always tell myself, things could be much worse. (There’s lots of folks out there much worse off than me.) And you will have more and more good days as your meds are adjusted and you learn to manage your illness!

Thanks for sharing about your PMR. You are very brave and you will overcome it. Hang in there. Know that the connection with nature will help both your mind and body fight the illness. As Winston Churchill said to his people, “Never give up, never give up…”

WOW! I want to applaud your acceptance of your journey. Life never takes us where we thought we’d go. Learning to accept, even letting go, is tough, and highly underrated. You’ve found a nugget of wisdom and I believe it will carry you through the bad days. My prayer is that you will have strength, peace, and comfort in your new normal. PS – You’re sooooo brave and I admire your positive outlook.

Sad to hear this 🙁
But you don’t mention treatment anywhere. 2/3 of patients have good and immediate results from cortisone medication. You do not have to live with pain. However, if you as a nomadic person are up against the wonderful US health care system, “best in the world”, I understand your problem.

Hi Vergard, I am receiving treatment in the form of steroids and I’m about to start another rather nasty drug. I did have immediate results from the steroids, but still have significant symptoms. But at least now I can accomplish the very basics for daily living like getting out of bed, having a shower and making coffee. But I can’t do much else. Fortunately I have the wonderful Canadian health care system!! It isn’t perfect, there are wait times to see specialists, but it is free.

Hi Anne
Please don’t give up. I was diagnosed with Lupus decades ago and was put on steroids (prednizone). Eventually I have achieved remission for about 30 years now. My Nephroligist (I have kidney involvement) and I looked at the blood tests each time to dial in the dosage. Keep the faith. You WILL get better.

Thank you for being who you are. Today. Thank you for sharing with such transparency and personal reflection. It means so much to me who admires your work but more so,, admires your character. You and Ray are truly inspiring to us. Tho this journey you are on is difficult and filled with challenges, you are still offering us much of yourself. Thank you ever so much.

Hi Anne,
I am so sorry to hear about your diagnosis. I know your story well as I have been on this autoimmune journey for 8 years and my cameras keep getting smaller and smaller. I too ,have began studying new creatures and it brings me great joy.
I hope that you find deep healing and comfort. Feel free to contact me by e-mail if you would like any resources.
Thank you for all the beauty you bring to the world,
Best,
Angela

Hello Anne,
What is going on here? Sooo many young people with auto immune disease these days. My wife also suffers from it and my daughter as well. Not PMR, but other auto immune diseases that are also debilitating. We feel it is from the glyphosates (roundup) used in the food supply, but who knows….We try to eat organic and GMO free, but so far no magic bullet. Good luck with your journey and I look forward to hearing you are in remission!

I am so sorry to hear about your new journey. I wish I could say all will be ok and for you grasp this. But it will because today you are angry and you need to fight.. tomorrow you will look at yesterday and smile I made it to look back on. What did I learn..I learned I am strong, I cherish what is around me, I look at it through a new lens of life. I love your “new normal” digital art.

I’m very sorry to read your story. I’ve also had a debilitating health problem that only now, after 12 years, have I managed to get under control. It certainly made me feel angry that my life was shutting down, and I’m very impressed that this doesn’t come through more in you blog post! For what it’s worth, I have taken up landscape photography in my late 50’s & early 60’s, and in between the periods when my health prevents it, I’m loving it, and I sincerely hope you will again too!

Well, I don’t know what to say, other than I will keep you in my thoughts. Your next road may be down the more advance education as you did so well before teaching your subscribers. Digital art is a great adventure, look into Fractals I do some and it is really amazing what you can create. Advance phone camera shooting, maybe focusing on younger artists. It may lead you down a more permanent, less m I can just wish you patience as it will come to you. I have a brother with Parkinson’s and two 95-year-old parents as well as my step mom’s daughter I think has something similar advanced rheumatoid arthritis, where her bones just disintegrate, so familiar with limited mobility and strength being frustrating. You have a lot of knowledge and experience which can be valuable and sharable to others, Take care and keep the spirit up as best you can.
Bill

Wishing you all the best through this.
As they say, “where there is will, there is a way”, and you letting is know what’s going on is a first step, and that you have found an outlet through your writing and new digital art, is a major step that this will not get down and that you are not going through it alone.
The community and friends you have made on your previous journey will be there on this new journey.

Dear Anne,
I have been following your journey for many years now. I first “met” you on BP and have been an admirer ever since. I have told many photographer friends about your courage to change your life and your generosity of sharing some details. You are a strong inspiration! Your writing is as engaging as your photography and we appreciate your many talents. You continue to be a fine example of courage, action, talents and strength. Thank you so very much for being You. I will continue to follow you on your journey and if there is ever anything that I could do for you, it would be an honor. Continue to light the way for us.
Wishing you only the very best,
Karen
Long Island, NY

Thank you Anne for your openness and honesty. I too deal with an auto-immune disease that I’ve had all my life but was just diagnosed with. While mine isn’t debilitating, a simple cough in my direction can have me bed-ridden for days. It’s frustrating. But in those times, I have also found a joy in digital art (and thank you for your texture collections, I love them) and writing has been easier with talk to text. Check that out – it has been a game changer for me. All the best and hope you are on the short end of suffering and this goes into remission quickly.

I first met you at the BetterPhoto event in Seattle. At that time I was on disability, not able to work at my chosen career and hopeful of enjoying my avocation of photography in the between times when my physical situation allowed. I have followed your travels, your transition from work-a-day to professional photographer with enthusiasm as it gave me hope. That was about ten years ago, maybe a bit more.

Today I am back at work, health improved enough to make a living, and with photography a very enjoyable avocation., I still find excitement in seeing your photography and learning from your lessons.

I certainly look forward to seeing the new art you produce and hope fervently that this temporary setback is short lived.

Hang in there, I hope you get the chance I have gotten to return to the old normal.

Hello Anne: I have been following you for many years and I am so sorry to hear about your difficulties. I hope you remain positive and reach a good outcome and continue to communicate with us anyway you can!

You are an inspiration by showing how you’ve adapted to your new normal. Wishing you all the best as you navigate this difficult time. I envision one day soon you’ll be piloting your boat atop the glassy waters.

So sorry to hear this. But if I may give you a bit of hope. I am almost 67 and became ill with an auto immune disease at age 10. Some days leaving the house is a challenge. I, too, am a photographer and love to be outdoors and hiking. Some days I can’t so I started to take photos of flowers because I could take all day if necessary to get a couple of images. This year is way better than last year.
Make friends with your disease. Accept it, talk to to it and work with it, not against it. And cry with it when that is necessary. Eventually you will find a groove where things work for you. Make your doctor you very best friend. Mine is amazing.
Right now I have no hope of remission. I have been there, but not now. My meds are no longer working and since I have tried almost everything available I am waiting another 18 months for new ones to hit the market. I will make it, but some days are reading days and some are small hiking days.
I wish you all the best. You will get there one day, step or moment at a time.

Anne,
What a trooper to reveal your current health condition and being so positive about your future. I amazed that you are finding other creative methods to express your love for beauty. Wishing you positive vibes as you tackle this new normal. I pray that the years speed by and bring you physical comfort so that you can return to your camera to share incredible images that only you can create.

Wow, Wow, Wow. Anne, as a fan, for many years, exchanging emails and following you through, not only, your photographic and RV adventures, but also loss of a parent and other worldly challenges, this is a stunning report to read. I had always held out hope that we could meet and share some time with you and Ray, when you were in the Phoenix area, but it seems that you are usually here, while we take our Winter venture to Puerto Vallarta. The thoughts of Karen and I ride with you on this newly directed route and hope you will be able to continue to enjoy, albeit limited, your adventures in the Southwest for many years to come. Please know that you have many friends, many that you have never met in person, that are rooting for you and Ray to make the journey down just one more rough road.

Thank you for your beautiful post — I admire your honesty. It’s a tough thing to try and find a “new normal.”

I was wondering if you have tried any functional medicine or integrative doctors? I have been an acupuncturist for 20 years and have helped many with autoimmune diseases. Acupuncture is great for pain management (and stress). But honestly, nutrition is the most important thing to reduce inflammation in the body. I would recommend seeking out a person who is trained in functional medicine and/or acupuncture.

My first love is photography too so I appreciate all your great trainings and insights! Take care!

First of all, you are hardly worthless! You’ve opened up a whole new aspect of photography for me with Lightroom! I put in a friend request on Facebook to you and hope you will accept so I can keep in better touch. Take care of yourself and I hope this goes into remission real soon. Sending prayers your way!

I have also been through the process of redefining my life due to disease, both Myasthenia Gravis (an autoimmune disease) and cancer. It is difficult, but don’t give up. The woman above posted about using integrative medicine. I’ve had enormous success with acupuncture for everything from joint problems to drug reactions. Healing usually lies in non-traditional approaches that stress wellness over intervention. Not to say ignore your western docs– don’t! But make them part of a broader team in a quest for health.

Anne, I am very sorry for what you are going through. I would not give up hope. I too was diagnosed with an autoimmune disease about a year ago, sjogrens. Fatigue is involved, pain, dryness, etc. Years ago I was told that I had fibromyalgia. Then it disappeared.

You need to mentally and physically adapt. I immediately went on an anti inflamatory diet lost 30 lbs which was positive. Felt better. I am able to have a workout with a personal trainer.

Dear Anne, I’m so sorry. I have no advice, as everyone’s journey is different, but I would echo the sentiment that you have so many friends and admirers out here that I hope in your worst of times you can remember hearts gently holding you safe.

Please know, too, that although I have probably hundreds of textures, yours are already among my very favorites. Please continue to let your creativity soar in every direction.

I think you are a true artist! I’ve admired your photography, and now I admire the creative way you are dealing with this challenge. You are continuing to be an inspiration to many, I’m sure. I pray God will give you the grace, strength, and the hope to be all you were created to be in and through this. I look forward to seeing what beauty this will produce!

Anne, through my involvement with PhotoForte, I count myself as a photographer who has benefited from your wisdom and generosity. It is a credit to your abilities that so many folks have conveyed their prayers, best wishes, support and advice. I will add mine as well.

You probably already know it, but I would recommend one of the Sony RX100 series as a lightweight, terrific travel camera.

Before I retired, I treated the psychiatric component of chronic medical illness in a # of my patients, Again, as you probably know, steroids can affect one’s emotional state. It sounds like you are facing things head on but if you have any questions please feel free to PM me.

Anne please remember you are not alone. Many of us have been “forced” to find a new normal after being diagnosed with an autoimmune condition. Unfortunately, you have a tough one to deal with. I send you healing thoughts and hope. Hope for finding your new role in the world and peace. Your absolutely amazing digital art with the eagles certainly looks like you’re on you your way. ❤️☮️

Anne do what you can to continue with your teaching and your photography. You may branch into macro photography. I hope the drugs are able to ease the pain and you can function as best as possible. Having support helps. do what you can to help remission along.

Hi Anne, so terribly sorry to learn about your challenges and wish you all the very best moving forward. Sounds like you have a very strong and positive attitude which of course is wonderful. So good that you have such a loving husband in your life who is helping to ease the burden and give you the greatest gift in life. Enjoy every moment of your new journey. My thoughts and prayers are with you.
Kindest regards from Tasmania Australia
Geoff

I admired you before I read this and admire you even more now. Acceptance sometimes is very difficult but the rewards for your spirit are worth it. You have a beautiful spirit and that will not change regardless of the time frame for your recovery. You are held in high regard by many and I hope you can feel the support that all of us are sending…..and please keep taking the Preservision so that macular degeneration doesn’t complicate the sight issue.
Thank you for sharing your story with us. I wish you and Ray all the best!

Hi Anne
Thank you for sharing, I can 100 percent understand where you are coming from having been diagnosed with PMR 14 months at 55. I went into steroids straight away and felt relief from the joint pain for the most part immediately (within 24hours) Apart from the most obvious effect of weight gain and a couple of setbacks along with steroid induced Type 2 Diabetes I’m almost off them and hopefully on that road to remission.
You are so right though things that I could do previously are. Now such a chore, and constantly feeling tired is annoying to be Frank,
Anyway we have to accept and adjust accordingly and hope that life doesn’t throw us further curve balls.
Best wishes to yo

Hello Anne,
I am so sorry to hear of your illness. My best friend, also an Ann, has multiple sclerosis, another autoimmune disease. She was a graphic artist and the disease has taken her vision and a lot of her mobility. It is a cruel disease but she is coping with it and she is still making beautiful photos.
You are still at the beginning of a long journey, You have a very positive attitude andvthat will help in your journey. As you accept your situation and limitations, you will see new opportunities such as your digital art. If you are enjoying this form of art, please take a look at Corel Painter. I think you will like it and be impressed with its capabilities.
Best wishes for strength, peace and hope.

Hi Anne. It broke my heart to read your story, but at the same time seeing how you let the new reality sink in, and started making changes to keep your passion going – as much as possible – gave me hope. Someone with this mentality will find ways to fight their way through this disease, and who knows, you might be one of the lucky ones who gets it for 2 or 3 years and it will be over. So take this period as an opportunity to slow-down a bit, and learn a lot of new things that will definitely help you get back to your routine stronger than ever.

I wish you a speedy recovery, and I hope that you keep pushing and learning about new things, and most importantly about yourself along the way.

Anne, hang in there. Be wary; do your homework. I had emergency open heart surgery 12 years ago [I am now 71] after I flat-lined during a chemical stress test. While they had my chest cracked, they dislodged plaque that gave me a left-sided hemiplegia; I could not move anything on my left side. After 8 weeks in a rehab, they put in a pacemaker (but they didn’t do that right either). I had that replaced, The I was diagnosed with PMR; they put me on oral steroids so I gained 30 pounds. I am still kickin’ and tickin’. In the interim, I walked my daughter down the aisle, took up digital photography, finished editing a 20-chapter 1400-page e-book, and am learning more and more about digital landscape photography with the help of a lady out in BC. If my late cousin’s will left me enough, I am going to buy a Mazda CX-5 and photograph the Appalachians from Cape Breton to Knoxville. I just had two enlargements made, one on steel and one on glass, for my PCP and his NP.

Hi Anne,
Thank you for sharing with us, so very sorry to hear about your illness and hope that you can recover as soon as possible! I enjoy reading your post as well as your books, like many of your followers, you have inspired me to become a better photographer.

I was aware that you had not been posting for a while and then getting you latest post really shocked me to hear your news. You have such a positive attitude and are still producing amazing art. Please keep posting, when you are able.

Dear Anne;
I too have an autoimmune disease issue – Docs are not sure if I have RA/fibromyalgia or Lupus.
However in our RV travels I have discovered another type of art that could be interesting to you. It takes very little supplies, it’s called Zentangle – just do a google search. You will see MANY beautiful designs all done with a pen & paper. There are websites that help you learn the designs, as well as applications for it. I can imagine one of your beautiful backgrounds with a Zentangle pattern over it.

Also, I have been reading all the POST here from the wonderful supportive people that have replied to you in just ONE day. Knowing you have that kind of support will also be a blessing towards your better health.
So maybe you will be doing a blog on a different subject matter than photography?

Just something to ponder while you are drinking your coffee & watching that family of Eagles in Campbell River.
Keep the faith and continue your thoughts about art and nature – you can’t go wrong with that.
Sincerely,
Teri M

Anne – I’m very sorry about your “new normal life” with PMR. I can’t begin to imagine what you are living with. You DO have so much to live for and plenty to offer us photographers. Thanks for sharing this journey. I’m sure I speak for countless others when I say that I look forward to your future posts whenever you feel up to them. Hoping today is a great day. Take care

Truly sorry to read this. You will be in our prayers. Really love what you do and hope you can continue to do it at whatever level you can. Wishing you all the strength in the world. Thanks for sharing.

I’m so sorry to hear that you’ve been struck down with PMR and had to drastically change your way of life. I hope you are one of the luckier ones and manage to not have it affecting you more than a couple of years.

Anne, I have always admired your fearless choices in life, your amazing photography and stories of the adventures you have been on. (I feel as though I have lived vicariously through you.) Now you are on a new path, It is not about where the future will take you, it is about acceptance of where you are today and how best you can live each day one at a time. Please take some time to read Ekhart Tolle’s 2 books or watch and listen to his videos, some are with Oprah. You already have realized that you are not your photography or a traveler (what you do). But nor are you now your disease. You wonder who you are? I am sure you will find that out, and find peace and enlightenment in your days to come. P.S. there are also E.Tolle study groups on Facebook, one that has helped me find peace up all the upheavals in my life. It is not about hundreds of steps to follow, its about you Anne. With love,…

Hi Anne, I’m so sorry to hear about this but am, at the same time, filled with admiration for your attitude and your determination to reshape your life in accordance with your current limitations. Never give up. Be grateful, above all, that someone who loves you is in your life. You’re in my prayers.

Anne I know you will find a new way to be you. My wife has had fibromyalgia for 30 years and has had to rewrite her story. I understand the pain and grief over the loss. Sending warm thoughts and good wishes for the journey you are now undertaking.

Anne
Love to see your pictures and hear about your travel adventures.So Sorry to hear about your present condition.Mine is a similar situation only with other medical issues. Your instructional videos are wonderful and inspiring to many, many people. You are amazing picture editor with a ton of images in your picture library.
My spiritual teacher always told me. “With this moment is a next moment Which is in fact an opportunity to grow spiritually.” Best wishes and smooth sailing into what ever is next for you

Hi Anne, I hope that you are well enough to make you trip south. The last thing you need is to endure a candian winter ( even though you have it easier on the west than we have in Quebec. ) . The trip will also allow Ray to release some of his stress, and believe me he gets stress .I look after two parents one with Parkinson’s and one with …. well we just won’t go there.
What keeps me sain is all the activities I try to do I between helping those I love. Hats off to the both of you. You will get better and I am sure Ray will be right beside you through it all.

HI Ann,
It’s hard just to know that you are suffering so much, but you are such a brave lady that eventually will recover 100% by overcoming this awful illness.
Your pride and strengths are reflected thru your writing.
May God bless you.

I, too, have lived with chronic pain for many years, nothing so severe as you are experiencing, but enough that it has taken its toll on my physical and mental well being. My life is not limited as your is right now and after reading your story, I am grateful for that.

I wish you quick healing and hope you find your new path as wonderful as the one you are being required to, at least temporarily, put aside.

Ann im sorry to hear of your diagnosis and hope remission comes sooner rather than later. Fibromyalgia blights my days and nights, it comes and goes like the wind. But photography is always there in one form or another to keep me sane. Keep doing as much as you can when you can, the world runs on your schedule now. Stay healthy in mind, body and spirit, i hope you pain free days and nights.
Karen x

So sorry to hear that you have developed PMR. Whilst its obviously very difficult for you at present, try to keep focussed on the knowledge that this should only be a temporary condition, and that you’ll make a full recovery in time. (Sorry about the pun!).

I developed acute Polyarthritis during radiotherapy, so have some understanding of similar debilitating effects. 2 years later, whilst not 100%, I’m much improved and can now do most of the things I used to.

Remember to be kind to yourself. It’s not always easy adapting to the new normal.

Hi Anne. So sorry to hear about your illness. Wish you the best for recovery. I am a retired internist and treated lots of patients with PMR over the years. Most do very well with Pednisone and are able to be up and around with little pain. If fact the textbooks say the lack of a rapid response to 20mg per day of prednisone in a few weeks should make the physician reconsider the diagnosis. If you don’t improve I would recommend you see a rheumatologist.

Anne, It’s hard to know what to say but just know that you are not alone. As you see by the comments so many people share your sorrows, joys and hope. Please continue to share your journey with us. Each day, look for a purpose, no matter how small, you will make a difference in your own life as well as for the good of others. Art takes many forms so continue to seek the beauty in everything you do. Sending love and prayers. God bless.

Hello Anne,
I’m very sorry you’re not well, but I truly admire your spirit and resilience and honesty.
It’s when life throws curve balls at us that we truly appreciate the special people around us and memorable ‘small’ moments in each day.
All the best to you and Ray,
Christine

Oh Anne
Have a Tussock hug ((((….))))….See below.
Life is full of challenges and staying creative is probably the very best thing you can do.
I am 81 and my challenge now is taking creative images with an iPhone . Its light powerful and web compatible and I have produced A2 prints all without carrying a ton of gear around.
I have followed your actives for many years and will continue to do so because I thought you were incredibly strong when you made the big decision many years ago and I am sure that strength remains.
If you wish go have a look at my site. Its a really different platform on Blipfoto and a thousand miles from Social Media as it is today and you may well enjoy the challenge as I have for many years.
Kia Ora from New Zealand
Roger.

Anne,
I am saddened to hear of your health issues. Hopefully this will go into remission shortly. Have you ever checked out the full time RV couple Changing Lanes? Tara deals with Lyme disease daily and I wonder if your symptoms might be similar. Here is a link to their video about the disease and all she has gone through to get a proper diagnosis. She may be someone you can communicate with about having terrible days while living on the road. Take care and keep us all posted.

Anne, my thoughts and prayers and a speedy recovery, you are still young compare to some of us. Don’t give up my dear Anne, health comes first and there are so many things you can do. Thanks for everything you done to this community, we appreciate it and learn so much. May God bless you and keep you always.

This was a very powerful post, Anne. Thank you for sharing your experiences. I wish you all the strength and perseverance you need to continue moving forward, working your way through these challenges. And I’m very happy to see you are finding ways to stay creative and express yourself. That’s a beautiful piece of art, The New Normal.

You have written so honestly about your situation. You are a courageous inspiration, and know from reading so many replies that you are not alone in your suffering. How you can meet the huge roadblocks with such determination and courage, to see ways to adapt to your condition.discover and search for new ways to work in a way that is meaningful to you is just amazing to me. I had a brother who went from being an outstanding athlete to a life in a wheelchair due to some never discovered condition. He just accepted his new self, refused to feel sorry for himself or dwell on his past. He worked tirelessly, helping two Presidents, one a Republican the other a Democrat to advance the needs of people with disabilities. He expressed his blessings because he always knew of others who were even more limited in their lives. I believe you, too, are on this path, the path to make the best of what you can do and not be pulled down by what you cannot do. I know it is easy for me to write this, because I have never experienced any health issues that even come close to yours, but you can succeed, in fact you already are successful because your positive attitude is winning. Onward and upward. Keep writing to us all.

So sorry things haven’t improved for you Anne. I know you’ve seen medical professionals but
your situation reminds me of so many news stories about people who have suffered for years to only find out they have Lyme disease, and that most medical professionals don’t look for or know how to properly diagnose for Lyme disease. Your picture and description of the birds was beautiful. We wish you the best and hope for a speedy remission of this ailment Anne
Safe travels!

Hi Anne, I have been reading the comments above and can only wish you well. You have been an inspiration to me in my photo journey. I am so glad that you are still able to get out and about and still have such a positive outlook on life even though you feel robbed sometimes. Take care. Ron and Lynne from Victoria Australia.

A sad story but beautifully written. I am glad you have positivity and the help of a partner. It makes me feel grateful that I have I have made it to the 70s without such a setback. I hope your love of imagery will help you through. Best wishes.

Anne, whenever I offer free advice to someone I don’t know, I always put my foot in my mouth. Hopefully today it tastes like chocolate, but here goes. I’m a physician specializing in internal medicine and pain management. Polymyalgia rheumatica is not at all rare and is **usually** straightforward to treat with low-dose prednisone (a corticosteroid). The type of disability you describe is extremely uncommon from just PMR, and most people live normal lives. Have you seen a qualified, board-certified rheumatologist?

Hi Dr. Jim,
Thanks for your comments. Yes, I have been through the ringer, had a whirlwind of tests, and I have seen a rheumatologist who also happens to be an associate professor and faculty member at the University of British Columbia. I would have to disagree that what I have described is uncommon from just PMR. I have met many people face to face who have been diagnosed with PMR who experience the same thing as I have. I am also on an online forum with hundreds of people who experience the same thing. Most people say that the early stages are the worst as we try to get our dosage of prednisone just right and figure out exactly what our activity level can be without causing a flare.

When you say “most people live normal lives” I wonder what you mean by normal. A normal life is not one where any little bit of activity requires days of rest and recuperation, where washing your hair is a major event that requires planning because you wont be able to function the next day, or where a 2 litre carton of milk is too heavy to lift. This is not normal. But it is, unfortunately, extremely common among people with PMR. In the later stages, some people are able to get their activity levels back, but this is a very common experience at the beginning.

Having said that, the problem is that there is not a definitive test for PMR. There is not enough research. So it wouldn’t surprise me one bit if, in the coming years, the researchers discover that what we are currently calling PMR is really 4 or 5 different things. Or 20 different things. There was a time when all of these conditions were just called “rheumatism”. Now there are all sorts of rheumatic conditions and all sorts of auto-immune diseases. I think “PMR” is a bit of a mystery bucket for inflammatory conditions. I am sure that there is a whole spectrum of conditions here, some worse than others. But I know that I am not alone in the drastic lifestyle changes I have had to make due to PMR.

I do appreciate and welcome your insight. But for now, the people in the know seem to have decided it is PMR. Although my rheumatologist did tell me to “keep an open mind” which I didn’t find very encouraging. I’m just glad that in all the tests and scans I’ve had they did not find something worse. As bad as this condition is, at least there is hope that one day it could end, which is better than forever.

You might be interested in this video from sports announcer Dan Patrick who discusses his experience with PMR and not being able to walk or tie his shoes. He’s had it for 7 years.

Yes, the prednisone works for pain, but it is such a horrific drug that the doctors want you to immediately taper off it, and then all the pain comes back and you have flares and yo-yo up and down on your medication. It’s awful. And very common. But if you don’t taper off the side-effects include diabetes, osteoporosis, as well as the lovely conditions known as “moon face” and “buffalo hump”. I’m sure you know this, but I am just stating it for those who don’t. Yes, there is a drug that will get rid of about 70% of the symptoms. But my rheumatologist said it would kill me if I kept taking it in these high doses. So then they add other drugs, which are cytotoxins that kill cells, yet they are considered better than steroids! I don’t see a lot of “normal” here.

Thank you for sharing your story with us. This is also a life lesson for us which teaches us that we have to cherrish every moment we have and to be grateful for our lives.

So thank you again for your story and for reminding me how precious health and life is!

Also, hang in there, and hopefully you’ll get better and better as soon as possible.

Ps: Have you heard about Anthony William and his book Medical Medium? I truly recommend to look out for him and for his books. Perhaps it will help you heal faster.
Here is the link: https://www.medicalmedium.com

I’d never heard of PMR. Thank you for educating me on this disease. I have tears in my eyes, thinking of all that you’re going through. And I’ll be eager to hear more about your new path as you discover it.

Hi Anne –
You may find it helpful to listen to or to read Eckhart Tolle. He explains in The Power of Now that who you are is not those things you identify with, our deep conditioning by society, and the image we create of ourselves for ourselves. Eckhart lives up in Vancouver area, so you are fortunate enough that you might have an opportunity to attend one of his talks.

Hi Anne, I’m sorry to hear about your “sudden” life change. But it sounds like you’re taking a positive approach, which I’m sure was not easy to come to.

This may fall into the category of things a person in your situation doesn’t want to hear, but I’ve always imagined that if I became physically disabled, I would finally get to those sedentary things I wish I had time to do– for example, go through my collection of thousands of color slides (from before I went digital), read through journals I’ve kept for about 40 years, and do the kind of new, creative things you’re doing — not to mention writing, which you are very good at.

I wish you luck in your recovery, and keep finding the silver lining in that sow’s ear!

I wish you well as you can be. I to am following a painfull path with RA and the ostio brand mixed in for fun and like to think that I can relate but we are so different I feel certain that no one really knows what your trip is like.
Our thoughts and prayers go with you along with love heaped in for good measure. Please be strong.

It takes courage to share a less-than-perfect story. I know. I too have an auto-immune disease. I have SLE Lupus. Spent a year on steroids and 10 years on oral chemotherapy. Which was a piece of cake from where I started: on life support in an ICU unit. I am in remission. Most days everything works as it should. But occasionally…..It is hard, very hard, to digest this kinda of thing much less process it. It sounds like you are doing just that. I offer you my support and well-wishes. Don’t pay attention to the numbers, i.e. 2-6 years. Everyone is different. You may skew the numbers lower; you never know. I’m rooting for you and I look forward to your next set of textures. I love the first two you developed. Think warmer darker colors next time. I have a particular project in mind:) And your digital art is lovely. It has inspired me.

Hello Anne! I follow you even I don’t habitually comment. I really appreciate your wok. But this time I am so move by your charing about what you are living, so inspire by your response to that… I want to thank you for that. Your story give me the courage to face what I am living with courage and confidence that “a new path” will emerge out of that. Thank you and continue.

Anne, as I suspected, you’re way ahead of me in addressing this illness. Sounds like you’re getting really good care. As you know, that’s not always the case, which is why I brought it up. THANK YOU for getting back to me!

Hello Anne. It has been a while and I am glad you are back. I missed you. I am sorry to hear about your PMI. I could feel your pain as I was reading your blog. My husband has PMI and has been dealing with this since last Nov/Dec. He was officially diagnosed in Feb/March. Thankfully, we was put on prednisone back in Dec so that helped with his pain.. Artie read your blog too and it was almost like we were reading about him. While his is not as immobilizing as yours is (thank’s to the steroids) he does have his moments. HUGS to you. We are thinking about you and happy to see that you are making progress. HUGS to Ray, also. From one caregiver to another … we like the hugs too. 😉

Dear Anne, Thank you for sharing this devastating health situation you find yourself in. I like the many above, am so sorry the way your health has taken a knock. I have always loved the way you have approached the teaching & information sharing of all things photography related..
Please take care, you are in my thoughts. To sharing many many more years ahead with you.
Jenny South Africa

Anne I know it is easier said than done….but fight the fight. Remind it who the boss is.
There are of course many days it will slap you down and you will have to accept that but on the days you can fight….give it hell. But most all, just always be you.
Many Blessings and Prayers for you Anne….Just know that God is on your side, even when it feels like he is not. Hugs to you xxxx

I’m rooting for you, Anne, as you face this health challenge with strength and grace and courage. You inspire others in everything thing you do. May you move toward greater health along with inner peace and continued creativity.

If you are willing to explore alternative medicine, I would suggest Tapping. It utilizes the meridians of the body and accesses the emotional congestion stored in the body. The more honest you are with yourself the better the results. I have had some success using this for back pain. You can view some videos on You tube. I wont be available for the next week but if you like I am willing to share a couple of scripts to try out. Let me know if I can be of assistance.

Hi Anne, Noel here from India. You gave me valuable info. on birding and landscaping ion the west coast and Arizona.

I am really amazed at you honesty and will to fight. will pray for your speedy recovery.

I can understand your pain as i recovered from near death situation with Steven Jhonson Syndrome and had to be on steroids for along time. Just 2 months ago i had a narrow shave with death again when i visited Ladakh(11,000Ft and Kardungla Pass, 18,000 Ft having the Worlds highest motorable road). Got an attack of Acute Mountain Sickness(AMS) and my blood oxygen level went down to58 against 90+ normal.

All the best and looking forward to some Artistic Photos. I won’t be surprised if you end up writing a book on this.

Hi Anne, my mom described her brain tumors’ side affects as “the new normal”. Praying for more good days then bad as you adjust to the “ new normal” for this season in your life, and that this season will be short. Hope we can connect as you head down the Oregon Coast.
Ps, I love your creativity with the textures!

Sorry to hear about your illness. It must be very bad not to be able to do the things you love.

Your medicine Prednison is a bad one. Have you tried alternative ways? I heard about a clinic in Mexico where they help people detoxifing their body. It helps often for rheumatic illness. We store a lot of toxic stuff in our body during our life. This is only one alternative treatment, I suppose there is more on the internet.

I hope that you can discover ways that will bring you relief. I too have an auto-immune disease but fortunately it does not cause physical pain, mostly fatigue. Don’t give up – natural medicine has helped me tremendously when Western medicine had nothing to offer (acupuncture is the best!) I trust that this experience will bring about evolution in your artistic expression. Wishing you the best!

Hello Anne,I am so sad heard from your disease.I will prayer for you specially to pas this situation.I tell you an advise ,change your living city and go to south,warmer places,go to hot water springs,I wish you get better ..
Donot put us alone .

Dearest Anne, you touch me deeply with your open and vuneberable blog. What I feel mostly is courage. Courage to go on despite the pain, to find new ways despite the despair… You have always been a inspiration to me and now more than ever.

Hello Anne, I am saddened to hear of your disease. I truly pray that remission comes as soon as possible. You have been a positive influence to me as an artist and you and Ray are the reason my wife and I are planning to take up RVing full time, spending the winters down south and returning to BC for the summers.
I am amazed at your strength of character to open up about your disease. Never give up that positive spirit. Know that there are countless people who love you, admire your work and wish you a quick path back to good health. We will be here anxiously waiting for your next blog or photograph no matter how long it takes!

Thank you for your excellent blog post. Thinking of your battle and the challenge to find the new normal–many diseases are like this. I found that in my cancer battle. It takes something from us, but what do we gain in return? There is indeed something, but it is a hard-won victory.
My prayer is that you will find that illusive victory.

Hello Anne,
Thankyou for you openness and courageous vulnerability. Your willingness to be so candid and honest is just so , so refreshing! Your inner strength is Herculean!!
I have a little story. Not to long ago I was stranded abroad, living in a culture so completely opposite to my own. I felt like a delicate flower harshly ripped from it’s comfy rooted home. I tried so terribly hard to make my way there and find my niche. In my struggle to find my feet I discovered Photography. This is when I started to relax and except my fate. Just about that time I started to not feel well. I eventually discovered that I had an uncureable condition called Chiari Malformation. It’s a neurological condition that in some ways shares a lot of the same symptoms as your condition.
Essentially my skull is too small for my brain. I too could not do the things I used to do. I couldn’t climb mountains our treck through deserts with my cameras and equipment.
It has been 8 weeks since I have had brain surgery and I do feel better. I actually feel like I want to pick up a camera.
I am just sharing this in hopes of letting you that you are not alone. Your words are inspirational to me.
I to am looking to create the “new normal
Thankyou for helping me not feel so alone.

My husband and I have enjoyed Ray’s videos on You Tube for quite a while, watching Ray’s latest video he mentioned your website. I’ve just spent hours looking at your photos, and finally to your blog. I’m so sorry to hear your health is giving you pain. I’m a cancer survivor and also have M/S so good days are few and far between for me. I’m thankful for the good days, I do hope you have more good days than bad ahead.

I’m new to your blog. Your work is fantastic. I also deal with autoimmune problems in that I have Fibro plus RA. I got to where I couldn’t hold my Canon equipment or go on long walks. I switched to Olympus and it has made a great deal of difference. I’m so hoping that everything works out and the meds do their work. The challenges are nowhere as much and as difficult as yours. Never forget that you have a lot of people out here pulling for you!!!

Reading your PMR and all the comments, I wondered if I had anything useful to add, but here goes. I can empathize with you, but my prostrate cancer was quite benign compared to what your experiencing. My mental picture was of a malfunction that needed correction. I was still me. Or I thought my cancer was like an errant child that made life really tiring, something that just is. ( that analogy sort of runs out of steam just there!) I hope you are, or soon get to, a state where each day is more worth having than not. Kindest regards.

Hi Anne,
I suffer with RA. Many days are not so fun. I have never heard of PMR but you sound very determined to get ahead of it. I encourage you to continue forward doing what you love. Sometimes you may need to alter how you do it but never stop moving forward. Many days will be good days. Thinking & praying for you on the not so fun days as well as the good days. Deb

Hi Anne,
Thank you for sharing and know that everyone who has seen your pictures, heard your story, or caught glimpses of you in Ray’s videos is pulling for you. It sounds like you have medical good treatment so I’ll just send you positive thoughts and best wishes for your recovery.
Stay strong,

It is a terrible feeling of not able to do quite a few things when your profession is photography and considering the amount of travel, you do in winter and the distances you make each year, I know how difficult it will be to take this in your stride.

I do believe in miracles and hope you get well soon. My prayers are always with you. Take care.

Anne, just read your post and am so sorry for this part of your journey and the pain you are in. May I suggest you researching the effects of Marijuana for your condition. I have known one person with PMR and Marijuana gave her much relief from the pain. I don’t know if Marijuana is legal where you are but getting a Medical Marijuana card could be available to you. As a senior citizen, me and several of my friends are discovering the benefits of Marijuana for the discomforts of old age.

Hi Anne, My room mate (Sherri) also has an auto immune disease, called Schleroderma. Unlike you her’s will gradually get worse as time passes. I have watced as she has transformed into an entirely different person. Like you she has had to give up many things that she truly loved. In place of these things she has found other things that are not so strenuous on her and that bring her peace in knowing she is still able to do some things. I have first hand knowledge of how strong you are. Keep fighting the good fight BUT also take it easy when you have to.

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I’m Anne. This is my new life.

I traded in a traditional career for a new life as an outdoor photographer and writer. I live in an RV and travel around North America photographing beautiful places. I write about travel, photography, and how changing your life is not as scary as it seems. Read More…

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